so far so good

well it has been almost three days since Skylo's chemo , as of right now he seems to be doing pretty well , no fever as of yet , his tummy isn't acting up , at this point we are on edge because at any moment he could go downhill , when his counts drop he gets very sick very fast , last night Nina was worried because he was really tired and did not want to eat , hopefully it is just a toddler thing , still no word on when he will have his MRI , hopefully soon , its time to get this nightmare over with

 mom took this picture on Sunday his last day of chemo , i sure hope that sweet smile sticks around

more chemo

sorry for not updating for a few days , I have kind of been under the weather , OK here is the scoop on the little man , he went and saw the oncologist on Wednesday , he feels that more chemo until Sunday is in skylos best interest so as not to get the tumors active again until radiation is done , he will have an MRI sometime , i love the oncology department but they do not like to give straight answers , I'm assuming it will be done within the next few weeks , if the MRI is good then they will get radiation going , this is ridiculous , I just wish they could get it going now , i know they have their reasons , its just so hard to watch the baby have more chemo , so far he is doing OK , but then again this will only be the third day , he seems to get really sick a few days afterwards so we shall see

momma says he slept right through chemo yesterday

exam day

Skylo had his eye exam today and we got some positive news for a change , there has been no change to some good change for his tumors on both eyes , he has an appointment tomorrow to talk to the oncologist to talk about getting the radiation started , its kind of sad that we want him to have radiation ,but if that means we can stop this horrible disease and stop its horrible treatments , then it is worth it , he may still need chemo this week since it might take a while to get everything set up for his radiation but maybe not , we will just have to see what the doc has to say tomorrow , as of right now Skylo has no fever or any signs of infection , he most likely still has CDIF though since he is still having lots of tummy troubles , phew , I feel so much better , Grammy loves you Sweet pea

exam had to be rescheduled

no exam today , sadly this means at least one more session of chemo , I am just scared that history will repeat itself and he will get sick a few days after his chemo is done like he has the last few times ,please no infections and no transfusions , I just pray that they reschedule sooner rather than later , every time he has chemo he is at such risk for everything

things sure can change

A year ago the idea of radiation was the last thing to do , in fact the Dr said at the first exam that it is the last thing we want to do and is the last resort , now we are hoping for the okay to start radiation so there will be no more chemo that Skylo must go through , it is such a bag of mixed feelings here , there is so much hope that the radiation will kill the tumors and make chemo not necessary anymore , on the other hand radiation can destroy so much tissue and bone ,it could also make his retinas detach ,and after all  of what he has gone through , he still could lose his eyes , wow it is overwhelming to to think of all of that , the risks are low for a lot of the side effects but it seems like for some reason the sweet lil man gets the other percent , this almost feels like there are two paths in front of him and a roulette wheel spinning to decide which one to take , his exam is on Thursday to decide whats next , I'm glad that I'm not the poor Dr's making this decision ,no matter what happens I know that Nina and Stephen will be strong and do what they have to do for their son , they are amazingly strong , I cant believe in a few short weeks my daughter will turn 20 years old , I am so proud of her for not completely falling apart , if Skylo ends up with eyes or not , he will go so far in life , he has the strength of a soldier , and has touched so many lives in his young life , I love you baby boy    

Giving up is simply not an option

lately I have seen so many blogs and facebook pages for kids with cancer and it got me to thinking about things , i think back to when Skylo was going through his first round of chemo , so many people asked all of the time how he is doing and showing such caring and concern for our little sweetpea , I cant even describe how much it meant to myself and skylos mom and dad to know we were not the only ones out there pulling for him , it gave me personally so much comfort
things are different now , since we found out that his cancer is back nobody hardly ever even mentions him , let alone asks how he is doing ,sadly not even my own family does anymore ,  it makes me feel like everyone has given up on him , I know that this has been going on for over a year now , and there could potentially be many more to come , but please don't give up on my little man , maybe that's why there are so many pages for cancer kids , to keep people asking , I don't care if I have a million likes for skylo , or have not had a news story done for him or big glorious fundraisers ,the god that I feel in my heart does not give miracles and mercy for how popular the baby is , a handful of people that know him and our family that keeps prayers and positive thoughts going are worth so much more than a million people who have no idea who he is or what he has had to endure , I'm just a simple plain ole grandma who loves her grand babies and would do anything in this world to take pain away from any one of them ,it frustrates me to no end that I cant do more , i hardly ever get to see  Skylo since they live in murray now , when i went down there a few weeks ago he didn't even remember me , he sure knows my voice though because he hears me everyday,sometimes the what ifs keep me awake at night or make me wake up in a cold sweat , some days it is a real struggle for me not to break down in tears for everything , I don't mean to be such a cry baby , but I really cant help it , I want everyone to know that I do appreciate all of you , just please keep praying and thinking good thoughts for Skylo , he needs that to give his little body the strength to keep fighting his battle

 

last chemo we hope 3/22/13

on march 22 skylo hopefully had his last chemo , mom and dad have talked to the docs and they feel it is time to start getting things set up for radiation treatment ,  this is so scary because in their words this is kind of the last chance to save Skylos eyes and to stop the tumors , if this does not work I'm afraid they will have no choice but to remove his eyes , this would be definitely a horrible thing to happen , but at the same time if it took his cancer away then he would learn to adapt and would not be sick anymore , we are not sure when it will begin but it will be for 21 days , five days then the weekend off , for an entire months , it is frightening because we just don't know how he will react or what damage it will cause , the side effects can be pretty scary , right now they are mainly trying to keep skylo as healthy as possible so maybe if he is stronger he can get through it better , he has another exam on the 11 , if everything still looks OK and there has been no growth then the radiation will be arranged , hey i did it , I caught up , GO ME , i will write more after we find out on Thursday what the plan is

1/28/13 more chemo and misery

Skylo started more chemo and had an exam on jan 28 , there was some change to his tumors on his right eye but the one they were most afraid of on his left eye had no noticeable change ,they also removed the cataract in his left eye so they could have a better look at the tumor, not the news were had hoped for to be sure , Skylo had his 5 day of this times chemo the day before his first birthday , we had a party for him at the Ronald Mcdonald House , he had fun but mom could tell he did not feel very good , he cryed a lot and just did not seem to happy , just like clockwork a few days later he was running a fever again , yep you guessed it , off to the ER they go , and of course was started on antibiotics first thing , they also discovered that he had another STAPH infection in his line again so they pulled it , he also tested positive for CDIF , that is in his case an infection he got in his intestines from to many antibiotics , he was very very sick for a long time , he was in a very critical state for two or three weeks , he would not smile or eat , all he wanted to do was sleep , we were so worried , it scared me because i was afraid that he just did not want to fight anymore and that he was giving up , i don't think I slept the entire time he was there , the phone would make me jump out of my skin when it rang , his blood pressure was high , his oxygen was very low , his counts took a nose dive and he needed a couple transfusions , it was a nightmare , it really felt like he might lose his cancer battle  , after a few days of being in the hospital they inserted a port that would be covered by skin so maybe he would not get another infection in it

theres kind of a nice side to this new port , he can now take baths again and can even go in swimming pools after it heals of course , what I do not understand is why he couldn't have had this kind of port in the first place , he may not have gotten so sick if he had, if my memory serves me correctly i think he had his next doses of chemo before he was released , a few days after that chemo of course he spiked another fever and was back in the hopsital , more antibiotics , more positive CDIF results , at least there was no infection this time , they figure the fever was from his counts dropping again ,GRRR this is so frustrating , I can see the pattern , why cant the Drs , I think he only stayed a week this time , it was awesome because mom and dad found them a cute little apartment that is not to far from the hospital , the baby was so glad to be home and out of that damn bed DOUBLE GRRRR

1/13 more chemo

in early January skylo went in for more chemo and another exam , not much effect on the tumors but I wonder if it is because he is allergic to the drugs so they dont work as they should , when they took him to the clinic this time before any chemo drugs were given he was given drugs to conteract the allery , it seemed to work because this time he did not get any hives , it seems to make him much more grumpy than the chemo stuff did but then again maybe its because he is older and knows whats going on more , a few days after the chemo skylo ran a fever again so off to the ER they went , as a precaution every time he comes in with a fever they give him 10 days of antibiotics , this will make sense of why I'm telling you that later on , so he is admmitted yet again and no matter what or if anything grows on the cultures he will stay for the duration of the antibiotics , nothing ever grew so he did not get an infection , they decided it must be a virus that had been going around

chemo starts again 12/10/12

on December 10 Skylo started a new round of chemo in the clinic which was an outpatient procedure this time , that was kind of good news ,before they did the chemo he was sadated and they put another PIC line into his arm , the chemo seemed to be going pretty well the first day , he was actually pretty happy

this was a different drug than they used the first time around and by the second day Skylo was back as a patient in the hospital , it turned out that he is highly allergic to the new kind of meds , he was so miserable , he had huge hives all over his body and could not even stand to be touched , it was horrible to hear him cry over the phone , but they still finished the chemo for three more days but he was an inpatient for almost two weeks , he would not eat or drink , he couldn't sleep , he was so uncomfortable , mom couldn't even touch him

they will still use the same medication but give him massive amounts of benadryl and steroids to hopefully stop the reaction from being so severe , i just did not understand why they just couldn't use a different drug but I'm not a Dr

not a good exam at all 11//12

in november of 2012 Skylo went in for another routine exam ,  but it was far from being routine , not only had more tumors grown from the old ones but he also had new ones , one was very tiny but very close to his optic nerve , also it was determined that due to the lazer treatment on his left eye he had very little to no sight in that eye and more chemo would need to be done for an undetermined amount of time , they said this time the chemo would only keep the tumors at bay until his skull grew large enough to do radiation , this as you can imagine was devistating news to here , it was as bad if not worse than the first time we heard he had cancer ,this time the chemo would be done in the clinic for five days in a row every 21 days , they also informed them that they must find a way to move to salt lake because they had no idea how long it would be if they were ever done , so nina and Stephen and Skylo came home and enjoyed thanksgiving with the family but had to return on the 8th of dec to get started , it was so hard to enjoy the holiday knowing what was to come , we enjoyed holding him and kissing on him and he enjoyed playing with his cousins and uncles , and so the roller coaster is climbing again  

cataract surgery .right eye

on September 20th Skylo had the cataract removed from his right eye , the could not do the surgery any earlier because they had to get his tumors under control first , the surgery was an outpatient procedure where the natural lens is removed and an artificial one is inserted into its place , he also had another MRI that showed no cancer anyplace , his left eye could not be done just yet , they only do one eye at a time just in case anything happens to the  first one ,he recovered very well and I think it helped him a bunch

just being happy for a few months

spending time with Great Grandma

ok mom , we can stop trying on costumes now dont ya think

helping cousin josh with the blocks

to cool for hair

 

chemo #6 ,6/29/12 the last one (or so we thought )

I remember every detail of this chemo , it was to be his last one ever , the nurses all sang a song to him about it being his last chemo , he got to ring the last chemo brass bell , and this meant that in a few weeks after his counts were good mom , dad and Skylo would finally get to go home where their families were , it also meant with  no PIC line he could finally take a bath in an actually bathtub , that was something he had never gotten to do yet , this was a very happy day indeed , 

Skylo and uncle Clinton hanging out at the ronald mcdonald house after his last chemo , we were all so happy

we came to see them  and take them back home on Aug 11th (Grandmas Birthday) what a great present for me , I took this pic at a restaurant we went to , what a little ham my skylo boy is

chemo #5 around may 29th

chemo and exam #5 were pretty much the same , I spaced writing down the info for this one , that is why I am not being very exact about it , sorry my bad

Chemo #4 , 5/1/12

on may 1 skylo had another exam , we got the best news , the docs were pretty sure that they had gotten all of the tiny tumors on his left eye and the only thing remaining on his right was some dead tissue from the tumor , the same day we got even better news , the blood clot was finally gone , WAHOO , no more shots twice a day , chemo went the same as before , of course he got very very sick and required more blood

even when he was all swollen and uncomfortable he was pretty good natured , the only sad thing is during and for a few hours after a transfusion kids get pretty sleepy , for some reason he started to need oxygen as well , this would be something he required for a long time , even after leaving the hospital

random pics of cuteness

chemo #3 ,4/6/12

chemo #3 and exam went very well , the tumors were still shrinking and they were able to zap the tiny tumors on skylos left eye , they were pretty sure they got it all , the tumor on his right eye was all but gone , wondeful news , things really seemed to be looking up for the little guy , they did another echocardiagram to check on the blood clot but sadly it was still there so he still needed his blood thinner shot  twice a day   , he did get very sick again and required a few more transfusions unfortunetly , he is a tough guy for sure , no matter how sick he was he always has a smile

chemo #2 , 5 weeks old

on 3/8/12 Skylo had another exam under anesthesia and his second chemo ,the exam really went well , the oncologist Dr Stratton reported that the tumors in the baby's eyes had shrunken by 80% , and the tumors that did not shrink had not grown and were so tiny they may try removing them on his next exam with a laser , this was awesome news considering he had only had one partial dose of the drug  , after he was awake he was admitted again ,  chemo was started that night and mom and dad could go home on Sunday if everything went OK , well this time around Skylo got pretty sick , he had horrible diarrhea and was throwing up buckets , his blood counts also took a turn for the worst and he needed a transfusion twice , it was very frightening for us because they warned of all of the possible side effects from a transfusion  , mainly for skylo it was his face swelled pretty bad and the gave him a diuretics to get rid of the extra fluid , on the good side was he almost immediately felt better , phew 2 chemos down , 4 to go

Back to the hospital we go 19 days old

on 2/22/12 Skylo started getting a fever , mom and dad took him to the local ER but almost immediately they arranged for an ambulance to take baby  and mom back up to primarys ,stephen  was  so sick that on the way to the hospital they had to put oxygen on  him , poor nina was freaking out yet again . i know because we were talking on the phone almost the entire way there , when the ambulance arrived skylos fever was almost 104 ,after doing an exam the ER docs figured out that the line in his chest was infected , he had a very bad STAPH infection , so much for the visiting nurses being more better at flushing his line than mom and dad could , it was also determined that skylo  had a blood clot in his chest where the line was , they pulled out the line and put a regular IV in his tiny arm , he was in the hospital from 2/22 until 3/2 . it was such a scary event , he was on blood thinners shots for months to dessolve the clot

worried mommy and Skylo

First chemo 2/9/12 , one week old

look at that huge thing sticking out of his chest , very scarey stuff chemo is , he got pretty sick and vomitted a bunch but he is a fighter and got through it pretty well , he can leave the hospital on sunday the 11th

i'm just going to start over

It has been so long since i have posted anything I'm just going to start over

This is Stephen , also known as Skylo , he was diagnosed with  retinalblastoma , that is cancer of the eyes ,at 5 days old  he has it in both eyes , he also was born with congenital cataracts , pretty rotten deal to have both conditions
it was so devasting to find out that such a tiny baby has cancer , it was one of the most horrible days of my life , Nina is Skylos mom , Stephen is Skylos dad , they were both basket cases , it broke my heart to see my poor young daughter so upset , and there was nothing i could do to  help ease this kind of pain , it was one emotionally draining day , first we met with the eye doctor that made the actual diagnosis , it took for ever waiting to be called back into the exam room , then waiting again for his eyes to dialate , of course the waiting room was packed , i wanted to pull my hair out grr ,
after we once saw the Dr things really started to move fast , it was a blurr ,first we had to go down to radiology for an MRI to see how far the cancer had gone , and if it was close to his optic nerves ,that is a bad place because the optic nerve is only a tiny bit away from the brain
after the MRI we went to a different floor to the oncology clinic to meet with the oncologists to find out the plan and what stage his cancer was , we sat in that waiting room I  swear another couple hours , while we sat there i saw so many sad little ones , they looked so sick and listening to the conversations between their parents really scared us to death , i felt so bad for nina , she kept crying uncontrollably , it was horrible , i have to admit that i shed lots of tears myself , one thing that really helped me at least was when this volunteer brought this big beautiful service dog in , her name was maggie , she was there to comfort the kids in the clinic , he asked me if I wanted to pet her and i just melted into her , she just sat there and let me hug her as i cryed ,I wish humans were like dogs , they always know when you need comfort and dont ask anything in return
anyway we finally got called into an extremly tiny exam room and we waited in there who knows how long , finally two docs came in , they gave the baby a pretty thural exam then it was time to have the tough questions answered , first they said the tumors were not anywhere near his optic nerves , great news , now to tell us what the treatment plan will be for Skylo , they said all of the following things kind of like a shopping list or a honey do list ,they inform us that in the morning he will be put to sleep and Dr hoffman ( the opthamologist )will do another more thural exam and also an ultrasound of the eyes to see if he has anything in the back of his eyes , ok freaking out here , he is a newborn , at the same time they will put a broviac port ( an IV that is placed near the heart in the  main artery leading to his heart )it has a spot that exits his chest to give medications like the chemo and also to be able to take blood without having to keep sticking him , also they are are going to take some bone marrow to see if he has cancer any place else , wow is all i can say ,    first he needs six months of chemotherapy ,every 28 days for two days at a time , oh yeah also in informs the kids that they really need to consider moving to Salt lake so they can be closer to the hospital , wonderful just move on up here , huh yeah right doc , things are not that easy , we finally got done and I had to leave because my husband had to be to work in a few hours so Stephen called his mom to come down , it was horrible to have to leave nina there , so sad , so tired and upset , i felt horrible but i did not have any choice , we did not even exspect all of this , it was like somebody kicked our legs out from underneath us , i cryed the entire 3 hours ride home , i just could not imagine pumping a newborn baby with poisen , will he be strong enough to get through something so harsh , i was definetly a deer caught in the headlights that day , that feeling lasted at least a few weeks to ,


The next morning around 6 Skylo was taken into the OR for all of his procedures , I think he was in there for maybe an hour or so , the exam showed that there was no cancer in the back of his eye and the bone marrow test showed no cancer anyplace else but his eyes , very good news , he was admitted to primary Childrens  hospital after he was awake , that was a wed and his first chemo would be on friday , and the roller coaster ride begins       
 

2/8 6 days old

this picture was taken in the morning early in the morning of the day he had to be put to sleep . he was so tiny they had to put his wrist band on his leg

it seemed like forever before they took him back to the O R . poor little guy was so hungry so I'm sure it was a big reliefe to mom and dad when they finally came and got him and he could go to sleep, this exam was to see how advanced Skylos tumors are , luckily on this day none were close to his optic nerve , they also did a spinal tap to check for any cancer in other parts of his body , he will start his first dose of chemo the next day